My body often feels like it doesn't belong to me. Obviously, due to tics, some body parts feel as if they are controlled by an outside force. Sometimes there's an inner directive, almost like a voice, that will tell my body to move. That's the voice of the urge. It tells me to twist my wrist, and it will repeat this directive until I do it. I can ignore it for short periods of time so that I can perform normal functions, but eventually, I will have to give in to the urge just to shut up my brain. That is followed by the relief that washes over me now that the tic has been performed. Depending on stress levels, health issues, etc, that period of relief varies greatly and can often just repeat the looping directive. That's pretty standard tic stuff. The "holding back a sneeze" analogy gets tossed around to explain this and fits pretty well. They put it on all the brochures, and it helps people understand us a little better and make us sound a little less freak of the week.
Then there is this extra special level of Tourette's that is a thousand gallons of weird, and that I only recently expressed out loud to John. And of course he completely understood because he has experienced it too, so I thought perhaps other people with TS (or their children with TS) may also feel this way at times. So I will do my best to describe it in the hopes that it may help someone else feel a little less sack of hammers.
There are days when I wake up and a body part feels like it's not mine. My left arm will cease to feel like it is attached properly, and when I move it, it feels foreign. Like an invading limb that was replaced in the night. I will become hyper-aware of its existence, and that alien feeling will become so strong that it feels wrong to use the arm. So I tuck it beneath me or press it hard against my side so that I can force a feeling of ownership to it. It needs to be touching another part of my body for awhile, a part that still belongs to me, so that it can reintegrate itself. During that time, the muscles tense up so much that it causes pain, which tenses up the rest of my muscles. After several hours, that fierce concentration spreads uniformly throughout my body until my brain decides to allow the limb to become one with the rest of me. This process is exhausting and uncomfortable to a spectacular degree and consumes so much energy that it's difficult to do much of anything while I'm waiting for the arm to assimilate. I can still use it when necessary, but it feels like working with a robotic arm, and it can be very disorienting.
I often feel so much envy for neurotypicals because I can only imagine what it is like to put on clothing and then shut off the part of the brain that feels them against your skin. I'm constantly aware of every inch of my body at all times. I feel everything that touches me so intensely that I am never comfortable. My skin crawls at the slightest provocation, and most fabric feels like wearing a sandpaper straightjacket. Having Tourette's requires one to multi-task every thought and feeling and learn to compartmentalize it all every second of every day. We have to filter through sensory stimulation that most people don't even think about. We are often aware of those tiny body movements, like blinking, that neurotypicals do without thought. You may be able to sit in a chair and carry on a conversation as if the chair is no longer there, but my brain still tells me I'm sitting on a chair, and it's a little too soft, and it's making my jeans wrinkle weird, and because it's too high off the floor, my feet aren't pressing strongly enough against the floor, and oh right, my friend just asked me a question about a show I'm currently obsessed about, so I need to shift my brain to form some words right now. I think that this amount of intense shifting in the way we relate our brains with our bodies is what creates the rift between them and makes us feel like our bodies are not ours. It would make sense that at times, our brains reject the acknowledgement of body parts that are being difficult. My brain puts my arm in a time-out because it's just very done with telling it to twist that wrist.
So this is a part of having Tourette's that I deal with, and maybe others as well. On the outside, I appear to have very minor Tourette's because my visible tics are minimal. Underneath that relatively calm surface lies a storm of activity that I imagine most of us with Tourette's rage through every day. And I've only begun to be able to articulate these feelings into words that I feel comfortable enough to share because I know it does sound crazy. But my continued goal in having this blog and being so open and honest about my experiences with Tourette's is to help parents of kids with Tourette's understand their children a little better. So that when a child tells their mom that his pinky toe feels like it's been cut off so he's gonna need her to tape it to the other toes, their reaction isn't quite as "What the fuck?" And I think we could all use a little less "What the fuck?" and a lot more "Whatever you need" in our lives.